Kane County Chronicle | Pierog: A life spent waiting
One out of every 63 Illinois children is born with a developmental disability. There are 20,000 unserved children and adults in the Illinois Council on Developmental Disabilities’ Priority of Urgency of Need of Services (PUNS) database.
The PUNS list includes 1,500 Kane County residents waiting for help from agencies like the Marklund Home for Adults with Developmental Disabilities in Geneva, which serves 96 adults on its 25-acre Mill Creek campus.
Gilbert Fonger, the Marklund Home’s new executive director, knows the impact that quality care can bring to his residents.
“Last week, I visited our indoor therapy pool,” Fonger said. “One of our clients, whose life is confined to being strapped to his bed or to a wheelchair, was for the first time released from his restraints into the weightless suspension of warm water. The joy on his face was almost spiritual as he felt his body’s freedom. This is the kind of hope we want to bring to all of our clients, but our reality is that we can only afford to operate aquatic therapy at 40 percent of our available hours.”
Since 1994, reimbursement rates, except for an occasional cost of living increase, have essentially remained the same. Illinois now ranks 47th in the nation for spending on developmental disabilities and is 51st, after the District of Columbia, when it comes to funding of community residential services. In 2011, $16 million was eliminated from the Division of Developmental Disabilities. This year’s proposed budget reduces an additional six percent from Illinois Department of Human Services’ funds.
“Eventually there will be a tipping point for nonprofit organizations serving the disabled and when they collapse their residents will have to look at hospitals to provide for their long term care,” Fonger said. “Organizations are spending their depreciation budgets to maintain quality treatment. They are living off of their buildings, deferring maintenance on their facilities until the economy improves or the roof collapses. If you keep kicking the can down the road eventually the can is going to fall off a cliff.”
One-third of Marklund’s $18 million budget is from state receivables. The remaining support comes from philanthropic donations and more recently deferring its capital improvements until a later date. While the state is up to date with its FY11 payments, Fonger believes if Marklund only provided the quality of care funded by the state that level would be unacceptable. State managed facilities cost $142,000 a person a year, while private organizations such as Marklund can provide the same or better quality of care for $57,000. While every dollar spent on supporting the developmentally disabled is matched with 53 cents in federal Medicaid reimbursements.
“It will not only be Illinois’ residents who will be losing services,” Fonger said. “It will also be our state that will lose money to help provide for those most in need.”
Kane County’s economic challenges and aging demographics also do not favor these caregivers or their children. Each year, young adults with developmental disabilities who have turned 22 exit special education systems into a community that can offer them surprisingly few supports and services. Fonger depicts a challenging future with limited options.
“To have a child qualified for a residential home, due to the long wait list, the caregivers have very few options,” Fonger said. “You either have to be 70 or 80 years old and unable to provide for your child, who may be 50 years old and has never lived independently of their parents, or tell the state that you can no longer financially be able to provide for your child. These individuals have no other options; they remain fully dependent upon their families, communities and the state.”
According to the Blueprint for System Redesign in Illinois 2008, prepared in partnership with the Illinois Council on Developmental Disabilities, about 25 percent of persons with developmental disabilities reside in households with primary caregivers who are age 60 or older. As these caregivers grow older and less able to care for themselves, so does their ability to meet the challenging needs of those who count on them.
The challenges facing these families are complex and may become increasingly more difficult as their communities face funding cuts in state support of respite care, combined limited prospects for adults with developmental disabilities to find employment or even socialization opportunities and a lack of accessible transportation.
“What does that say about our society if we turn our back on those who need us the most?” Fonger asked.
• Corinne M. Pierog, a St. Charles resident, is an organizational management consultant. She can be reached at sustainableleaders@yahoo.com.
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